Hi all, since my formal DX in May, things are moving along. Neuro wrote to GP recommending Nortriptyline to help nerve pain and sleep.
He recommended that I consider Ocrevus as first choice, or if not then Tecfidera, to be started ASAP.
After about 10 days on Nortrip, have slowly titrated from 10mg to 20mg - nerve pain still present but kind of fuzzy if that makes sense??
Sleep - what’s sleep!!! Absolutely no benefit noticed whatsoever unfortunately.
Have appt for end of June at “Newly Diagnosed Clinic” run by MS Nurses which is just for general info and told that at the clinic I would be given another appointment with my specific MS Nurse to discuss DMD’s in detail.
So imagine my surprise to receive a letter this morning offering the DMD appt on Weds next week!!! " weeks before the other appointment.
Can only assume there may have been a cancellation…or the mfrs of Ocrevus want some data gathering from my hospital, which is also an MS Research Centre…maybe they are offering a Buy One Get One Free !!! (ha ha ha ha joke)
Like RemixRay, I now have to make a decision, but both of the choices seem equally scary really.
I don’t want my MS to progress of course, but neither do I want some of the risks caused by such strong immunosuppression drugs. There has been a lot of cancer in my family and I’m a bit hung up on it…perhaps more so because my closest friend is currently battling severe bowel cancer.
I shall be interested to find out how they plan to ensure I have no existing malignancies, which is recommended as a necessary pre screening by NICE for Ocrevus.
Yep as you can all tell I’m a little anxious!!! Probably the lack of sleep causing disproportionate worrying though, added to my general loopiness caused by being a lady of a certain age.
I’m not sure how long I can continue on 2-3 hours sleep in every 24 and don’t have very sympathetic GPs at all here I’m not sure what the answer is.
Can MS Nurses prescribe does anyone know??
Anyhow, I’ll update next week after chatting with MS Nurse
Thanks for listening everyone ,